Jason’s Story: “Playing to Win”

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In many ways, Jason Shoen is a typical 14 year old boy. He loves sports and playing basketball with his dad and his older brother—making them both work for their wins–and he gives his parents as much grief as a teenage boy usually does. He thinks he’d like to be a NASCAR driver when he grows up; but his parents think he’ll be a preacher. They say Jason’s faith has been evident in how he’s handled himself through the last four years, which his dad describes with words like turmoil, uncertainty, life-changing and miracle.

“Of course, as his parents, we knew Jason was born to be a champ,” says Jeff Shoen. “While we didn’t realize it at the time, we’ve since figured out that Jason was born to be so much more than that. He’s been a leader for us—showing us his faith—and inspiring our entire family.”

At age 9, Jason was injured playing basketball and had a concussion. He was an energetic and athletic kid who seemed to recover just fine, so he and his parents put that injury behind them.

“About a year after the concussion, my wife and I and other family members started noticing changes in Jason,” recalls Jeff. “This kid who loved to play was lying around a lot more. Even lying down on the pavement while his cousins played basketball around him.”

“At that point, I knew something wasn’t right and took him to the doctor,” said Jason’s mom, Melissa. This was the first of many appointments.

For the next four years, Jason suffered. His parents and his brother—Jake— suffered too, because the bright and active boy they loved was changing before their eyes.

He didn’t test positive for Lyme disease. He didn’t have Mononucleosis. Perhaps he had Chronic Fatigue syndrome. Or, maybe he was allergic to eggs or dairy? Jason changed his diet but it didn’t help. He complained about having double vision and suffered from debilitating headaches. Nothing helped and Jason continued to experience vague symptoms.

By 12 years old, the changes in Jason were becoming more pronounced. Some classmates even started to bully him. He struggled at school.

“At this point we were seeing one of the biggest lights in our lives start to flicker, and we just wanted it to stop,” says Jeff.

It didn’t stop. Jason continued to experience more vague and inexplicable symptoms.

Despite something not being right, Jason continued to play basketball. Jeff recalls that Jason didn’t score a single point that season.

What’s Going On with Jason?

“One evening, we played backyard hoops, and I noticed Jason couldn’t close his hands, his fingers were curled up and he was unable to grab the ball. When I passed the ball to him again, he dropped it,” Jeff said. “In that moment, the small changes over the past four years added up for me. I wondered if Jason had a brain injury or neurological condition. That night, after everyone else in the family went to sleep, I stayed up for hours. I read and searched most of the night to understand what was happening to my son. The next day, I shared my findings with my wife and we told Jason we were taking him to his pediatrician with the hope of finally figuring this all out with him.”

“After doing a neurological exam, the doctor determined Jason did, indeed, have a neurological malfunction, with significant weakness on his ride side, and some weakness on his left side. The doctors ordered an MRI and an EEG. The MRI identified the problem—the source of our family’s pain, frustration and helplessness for the past four years—a Chiari malformation!”

Chiari malformation is a condition in which brain tissue extends into the spinal canal, causing a blockage of cerebral spinal fluid and shutting down nerve function. Jason was slowly losing his motor skills and becoming almost paralyzed. He was going to need brain surgery.

“I was 13 years old, and instead of being in the backyard playing basketball, I was going to have brain surgery!? Wow, that was a lot to comprehend,” Jason recalls. “To say the past four years had been challenging is a bit of an understatement. But, I always knew that there was a reason I was going through this; it was part of God’s plan for me. It wasn’t always easy for my parents to see, but I knew in my mind there was a purpose for this. I had gotten through this so far with my faith and the support of my parents and my brother. Now, I met someone else—Dr. Mark Dias—who was going to help me cross the finish line of this journey, so I could get back to my other sports and the rest of my life.”

When Jason met Dr. Mark Dias, pediatric neurosurgeon at Penn State Children’s Hospital, he knew he’d found his new head coach. The vague, unexplainable issues—fatigue, headaches, double vision, pain, balance problems, poor coordination, trouble swallowing and speech problems—that had sidelined his active lifestyle for the last four years would soon be behind him.

“We were so grateful to meet Dr. Dias. He took the time to answer our questions and help us understand what was going to happen. While we were thrilled to have found answers for Jason, Melissa and I were terrified that our son was about to have brain surgery!! We had confidence in Dr. Dias; and, as we had done so many other times in the last four years, we took Jason’s lead. He was calm and collected,” says Jeff. “Despite the fact that he was facing brain surgery, Jason’s sense of humor and positive attitude still came shining through. On our way home from meeting Dr. Dias, Jason played Journey’s Double Vision for us—saying that double vision had gotten the best of him.”

Jason remembers talking with Dr. Dias before surgery. “He asked me what I wanted to be different after surgery. I had so many symptoms, but I guess the one thing I wanted was for my voice to be normal again—I always sounded hoarse.”

Playing to Win

Melissa says that Jason’s recovery was a tough course. Despite bouts of nausea and a rigorous schedule of physical therapy stretched out over many weeks, Jason applied a full court press to get his health back on track. He continued to inspire his family with his positive outlook.

She says, “He is one of the strongest people I have ever seen.”

Jason worked hard and is now fully recovered, back to shooting hoops and making more baskets than ever. In fact, in his first year back to basketball, he scored 28 points! He looks at what he’s been through as a good, life-changing experience and credits his physical therapy with improving his confidence and sense of accomplishment. His dad, Jeff, says that now “He talks with a deeper voice than I do—I guess that request to Dr. Dias helped!”

Jason worked at his recovery like a professional athlete training to win the biggest game of his life. His characteristic drive helped him rebound ahead of schedule. How did he keep his eyes on the prize? Jason had faith and never stopped believing in God. He said he also believes in the concept of team: “You’ll only be better if you work together…you can’t shoot every ball yourself.”